Saturday, June 25, 2016

The SSDI Dilemma

One of the hardest things any American who sufferers from a Chronic Disease will ever have to deal with, especially with all the election chatter about a bankrupt system, is the idea of applying for SSDI or Social Security Disability Income. SSDI is money that is set aside out of everyone’s paycheck into a pool to be distributed to people who can no longer work due to disability before retirement age. You have paid into it. I have paid into it. My children are paying into it as we speak.
So why is it so difficult to start the process of accessing a pot of money set aside for this very reason, the eventual inability to work, that we all paid into? It’s our money. The government took it from us to afford us this protection and income if the time came when we couldn’t work and were too young for Social Security itself. It should be easy to request and utilize our share right?
Apparently not. You see, applying for disability isn’t really that hard. The forms are available online and they are very straight forward. It’s gaining the mindset that is difficult. The ability to accept the idea that you can no longer work due to the effects of your Chronic Disease doesn’t come easily.
Imagine this: You started your job at a young age. It has worked out well over the years and become a career for you. A career you built by making decisions and moving into departments that specialized in things you were passionate about. You don’t even mind staying late or being on call. You love your job and you are happy doing it. But you are also sick. You have a degenerative Chronic Illness that is hard to predict. You need special accommodations to do your job. And that’s OK for now. There’s still so much you can do.
But time passes and your disease gets worse. Working becomes tiring and you begin to take more time off due to flare ups, illness, and the need for your body to recover after some of these long days. And there’s pain that now requires stronger medications. And stronger medications bring side effects. You can still work though. But as the disease continues to take its toll, going part time begins to look like a good option. It’s the best of both worlds, but can it last? That becomes the voice in the back of your mind. You want to work. You love to work. But working is taxing on a body that fights itself. Working is now exhausting and your medications don't help that. And when it finally gets to the point that your job pushes you beyond the limits of what your body can tolerate, you have to make the decision none of us likes: Can I keep working or do I apply for disability?
Here’s what is really at stake. I haven’t met one person yet that wanted to give up working. So we wait too long before we finally apply. To us, losing our jobs is losing a piece of who we are. And being Chronically Ill, we already feel broken and less than to begin with.
Which brings us to real reason applying for SSDI is so hard. Simply put, it’s the word disability itself. We have to admit we are now disabled. Enough so that we can no longer find a way to make our careers work and sitting at home is the better and healthier option. And who really wants to admit that? Our society is so rooted in being someone, producing something, being important somehow that even stay at home moms are given a hard time. It does not bode well for a young, chronically ill, Sjogren’s patient who can barely walk and whose brain fog has become so thick it can be cut with a butter knife. It doesn't help that the constant debate that swirls around welfare recipients includes the words "lazy" and "entitled". SSDI may not fall under the true welfare umbrella, but most Americans don't understand that and the fact that many chronic and autoimmune diseases cause invisible disabilities, the labels go downhill from "lazy".
Given that's the current atmosphere in the country, it’s incredibly hard to accept the label ‘disabled’. I won the right to use that label in October 2015. But I still have trouble accepting it. In my mind, I am still useful. But there is no current job I can physically do. So what use do I actually have? That’s the real quandary behind 'disability': Did our job define us then and if so, who are we now that we are 'disabled' and can no longer do that job?
I feel lost a lot. I can no longer help the people I did while working. And I loved helping them. I am considering volunteering. But I don’t know how much activity I can tolerate. And how would volunteering be different from a job? Most days, I feel like my life doesn’t start until my husband and kids get home. But I don’t want to feel that way. I want to be productive. I want to matter. I don't want to be the label I have.
This becomes the basic fear when applying for disability. I for one still struggle with it. Yes, I am disabled. Yes, I deserve the $852/month I get because I worked and I paid into the system with every paycheck I earned. But I am not actually doing anything to earn it now. But then again, I am also not worthless. No one is. There is just a period of time between gaining disability and moving forward in your life that is very dark and scary.
Change is always hard and labels such as ‘disabled’ don’t help any. They can keep you down when it’s time to reboot. It’s OK not to have a plan for awhile. Take time to discover an inner passion or to rediscover an old love. Take chances. Experiment. Disability isn’t the end of being productive, we just have to find a new way to fulfill that goal. And we will. I have yet to meet a person who only had one skill in life. Your new skills may be hidden, but I’m sure they’re there. Now is your time to find those hidden talents and make the most out of this new chapter in your life. I’m writing again. After 28 years, I’m writing again! And It was accepting my disability status that allowed me to do it.

About Me

Born and raised in Rochester NY, I was diagnosed with Sjogren’s 4 months after my second son was born. My kids are now 21 and 23 years old. I have since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. I have raised my kids, worked at my career for over 30 years, and have been a wife to her husband of 26 years while being diagnosed with an autoimmune disease for 21 of them. I currently writes from the heart about these experiences while wrangling our one rescue dog and three rescue cats.